I am 36 years old and, like millions of other women in Ukraine, I have a family—a husband and two daughters. I have my hobbies and a job that I love, a job that lets me fulfill my potential and be an active citizen. My hope is that my activism will help to advance the rights of drug users in Ukraine and improve the quality of their lives.
To be at the International AIDS Conference in Washington, DC would mean a lot to me. I would’ve wanted to share our issues with the delegates and I’m sorry that the US immigration policy restricts entry into the country for people like me. It’s a shame that my drug dependency has to stand in the way of opportunities available to me in life. I’d like to believe that this will not always be the case.
My country, Ukraine, is a facing an HIV epidemic that is concentrated among its most vulnerable groups. This is a huge problem, the solution to which, in my opinion, depends on the political will of our government as well as on the engagement of those most affected by the epidemic. I’ve been living with HIV for the last 12 years. I know that in order to stay alive and healthy, I need to take care of myself. My life and my health are my responsibility. Overcoming the HIV epidemic in my country is our joint responsibility. The more personal our engagement, the more effective our response will be. Perhaps, even my voice by itself can make a difference.
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Using drugs used to be the biggest problem in my life. I managed to overcome it because I had access to opiate substitution treatment (OST). I’ve been a buprenorphine patient for the last four years and have been able to live a normal life, raise my kids, and do the work I love. There is no longer a need to run around looking for money and drugs. Every day I see the way OST is making a positive difference in the lives of others. I see women who have children and who’ve come to seek treatment in hopes of getting their lives back. A mother devotes all of her time and energy to her children. A mother who uses drugs is often torn between her children and her drug use—such is the harsh reality of our medical condition. This is why many women, like me, were already HIV-positive by the time they began OST treatment. They simply didn’t have the energy, the time, or the means to take care of their health when they were using drugs.
OST has given us new opportunities to live a fulfilling life and experience the joy of motherhood, and we are grateful to those who pushed hard for its introduction in Ukraine. However, as patients, we face extremely challenging treatment conditions, and we think it’s time for a change.
Every day I spend more than two hours to get to the OST clinic for my medication. In Ukraine’s larger cities this can take up to four hours. That’s 730 hours a year. I would love to spend these 730 hours on something else: my children, the job I love, my health. Yet the medical system in Ukraine is quite rigid and doesn’t allow for OST take-homes or prescriptions. The bureaucracy and my status as a drug-dependent person leave me no opportunity to change the situation in the region where I live.
I have a dream—to spend a vacation with my kids by the sea. However, my medication, buprenorphine, is only available in a few regions throughout Ukraine, and none of them are near the sea.
In addition, as OST patients, we are constantly at risk of having our diagnosis disclosed against our will. The confidentiality laws in Ukraine are poorly enforced, and the medical personnel often gets away with breaching the law. As a consequence, people with similar diagnoses to mine are frequently subjected to degrading treatment. Then there is the privacy of our children. We worry for them. If their teachers or the other parents find out that the child’s parents are HIV-positive or use drugs, he or she will face serious problems. And let’s not forget about the police. They think my medical condition is a criminal offense. I often see OST patients getting detained outside the clinics, being pressured and manipulated as they go into withdrawal while in detention.
The latest changes to Ukrainian OST regulations complicate our lives even further. From now on, anyone of us can be kicked out of the program for relapsing (using illicit drugs or alcohol), missing a visit to the clinic for any reason, or being charged with an administrative offense (even jaywalking or smoking in a non-smoking area). If I get sick and am admitted to the hospital, I will suffer in withdrawal for the first few days while my doctors go through the bureaucratic formalities of transferring my medication to me in the hospital. If I lose my job, I won’t be able to go away to a different city without also losing my spot at the clinic. Now, every time I go out of town, I’ll have to show a vacation slip or a travel authorization form from my employer to my doctor. And if anyone at work finds out that I am an OST patient and have a history of drug use—I can lose my job…
With these changes, fear has become a permanent part of my life. I am even scared to be a mother again. Because of my fragile health and my ties to the OST clinic, I worry that my experience of motherhood will turn out to be desperately miserable. I am not the only one faced with difficult choices. People who use illicit drugs now have two options: to continue their life as outlaws, or to seek treatment and embrace OST the way it’s currently set up in Ukraine. The effects of these new changes to the OST program will be significant: the number of OST patients is likely to decrease, which will inevitably lead to an increase in HIV incidence and mortality among injecting drug users as drug users switch back to heroin and sharing syringes. The goals that the government and the community have set out for themselves won’t come close to becoming a reality under such conditions.
In short, the rules need to change if the government is to reach its goal—to decrease HIV rates among injecting drug users, and if we are to reach ours—to ensure a life, where our health and our rights are protected. I want my voice to be heard and considered. OST patients—people like me, who are dependent on drugs and often have a host of other health problems—also want a future and a normal life. We want to have the same opportunities to work and travel around and outside of the country as anybody else, and we want those rights protected. We want the right to live free of fear, with dignity and hope for a better future. We want to be part of the solution to the HIV epidemic in our country. And we want to help shape a society where everyone is entitled to equal rights, irrespective of their medical condition.